Thank you to Jamie for sharing her journey with epilepsy and information about her amazing podcast! Jamie is a wife, mother, epilepsy survivor and advocate. Check out the q&a below to learn more about how Jamie advocates for epilepsy and lives her life despite epilepsy stigmas.
1. Hi Jamie, tell us about your first reaction to being diagnosed and how did you overcome the negative stigmas associated with epilepsy?
I was re-diagnosed with epilepsy when I was 21 years old and pregnant. Previously, I had seizures when I was first born (premature at 32 weeks) and then in kindergarten, but I don’t remember that much.What I do remember is having to go to a doctor for EEGs, going back to school with the glue in my hair, and taking my chewable medicine. My second diagnosis rocked my world since I was pregnant. I lost my job shortly after because of having a seizure, and it was hard for me to find a new job when 5 months pregnant and not being able to drive. I was confused, still thinking I could outgrow it (like doctors previously thought), and overall unhappy.
It wasn’t until my late 20s that I decided to change my environment and become healthy. I limited my alcohol intake, started eating cleaner and minimally processed foods, incorporated higher fat foods like MCT oil and avocado into my diet, really focus on brain health, and exercise that I realized how much mindset contributed to my physical well being. I also started running and trained for my first marathon- which took major willpower and persistence, considering I had a seizure after a race!
2. What advice do you have for someone who has been newly diagnosed?
Live your life as you would without seizures- they do not define who you are. Yes, you may need to find other transportation accommodations or a new workplace- but in today’s world, you have so much access to these things because of the internet! I work from home and have the passion to help others with epilepsy work from home as well. Think of me as your epilepsy mindset coach. Like my friend Meghan said in my most recent podcast episode, your path may have taken a detour, however your goals are still accessible. Turn your pain into your purpose, ask for help, find a community, and go do whatever it is YOU want to do.
3. How has your epilepsy journey influence you to become an advocate and in what ways do you advocate for epilepsy?
When I first started a blog in 2011, I knew little to no one else that had seizures. In fact, when I “found” my first friend Sarah, and she lived near me I was so excited! I created a team and made shirts for the annual Epilepsy Walk, and Sarah and a few others joined me. That is when I knew I could make an impact in the community. I am also a seizure first aid trainer, have created a BFF Guide to Epilepsy for caregivers, and a mindset coach for people with Epilepsy.
4. Tell us about your podcast 1in26, what can listeners take from it?
1 in 26 is the statistic in which people are diagnosed with Epilepsy- and I want the community and the newly diagnosed persons to know that we are just like you. Advocates come on the show to talk about it more, share their journey and how having this disability does not define who they are. My mission is to end the stigma, talk about it, and share each other’s stories.
5. What is the most challenging aspect of living with epilepsy?
Epilepsy is an invisible illness- it is hard to live with the condition. Brain fog, fatigue, lack of memories- I have very little recollection of my childhood. At one point my mom showed me pictures of a vacation, and I did not remember any of it. I have been seizure free for 5 and a half years, so that is amazing! However, the symptoms of having a chronic illness do not go unnoticed- those who are close to me cannot relate either because they haven’t experienced it. That is why community is so important.
6. If you could describe your epilepsy journey in one word, what would it be and why?
Empowering. I have turned this pain into my purpose and found my passion of serving others- blazing the path and allowing the 1 in 26 to follow, hopefully more smoothly and with less side effects 😉
7. What’s next for you as an epilepsy advocate?
I will continue to grow my podcast, advocated and attend speaking engagements for the community. I am a mindset coach for those who are newly diagnosed or are looking to begin their work from home journey and not let Epilepsy define them.
What a wonderful interview! If you would like to keep up with Jamie you can follow her on Instagram @jamiewissinger and listen to her 1in26 podcast on Anchor, Google Podcasts, or Spotify!
Hope 4 Epilepsy 